Societal Uses of Genetics

People’s genetic information is increasingly being used for a wide range of non-clinical purposes, such as solving crimes, determining paternity and exploring one’s ancestry. As research and the increased use of genetic and genomic tests reveal ever more about people’s genetic constitution, it is imperative to have safeguards in place to protect people’s genetic privacy and prevent the misuse of their genomic information. ASHG strongly opposes discrimination on the basis of genetic information, such as by employers or insurers, and opposes the use of genetics to justify restrictions on individuals’ reproductive freedom.

Key Issues

Genetic Discrimination
ASHG supports policies that ensure that an individual’s genetic information cannot be used against them, and has long supported the establishment of strong protections against genetic discrimination. For 13 years, the Society advocated for the U.S. Genetic Information Nondiscrimination Act (GINA) until it was passed into law in 2008, thereby establishing new protections for Americans against genetic discrimination in the workplace or through health insurance. The Society continues to advocate for the robust implementation of GINA, and for similar protections outside the United States.

Privacy of Individuals’ Genomic Information
An individual’s genome includes information on his or her risk for disease, ancestry, and relatedness to others. ASHG believes that, whether for research, clinical use, or any other purpose, disclosure of this information should be entirely voluntary. Similarly, ASHG believes surreptitious testing - which involves genomic analysis of people without their knowledge or consent - to be unethical, and supports measures that prohibit such testing. In establishing privacy protections for individuals, it is critical to avoid imposing undue restrictions on the conduct of genetics research, which is already subject to federal regulations that protect the rights of research participants, including informed consent.

Restrictions on Human Reproduction
ASHG strongly opposes laws, regulations, and any other efforts intended to restrict reproductive freedom or to constrain freedom of choice based on known or presumed genetic characteristics of potential parents or the anticipated genetic characteristics, health, or capacities of potential offspring. The Society opposes efforts to implement programs that restrict reproductive freedom based on genetic information; such programs are scientifically and ethically unacceptable.